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Alex: The Fathering of a Preemie

Alex: The Fathering of a Preemie

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Alex: The Fathering of a Preemie

Länge:
326 Seiten
4 Stunden
Freigegeben:
Aug 30, 2005
ISBN:
9781613734667
Format:
Buch

Beschreibung

Nearly half a million preemies are born in the U.S. every year. But like most people, Jeff Stimpson, the father who wrote Alex, never gave premature babies a thought beyond the cliché of medical miracles. Many of these children grow up with special needs, necessitating an increasing and ever-controversial burden on society. Medicine is creating not only a new population of individuals, but a special and growing population of parents and families. Alex was born in June of 1998. He weighed 21 ounces. He spent the first year of his life in the hospital. This is the story of his first years. It's a story of doctors, hospitals, conferences, hate, love, gratitude, envy, frustration, joy, and worry. It's the story of a preemie.

Stimpson saw his son get a spinal tap without anesthesia (it isn't given to micro-preemies) and three times witnessed Alex stop breathing-once on his lap. Stimpson and his wife were at the hospital every day, and there they encountered not only how far the science of saving preemies has advanced but how far it hasn't, and how far healthcare and other professionals need to go to understand what parents go through when their infant lives in a hospital. The Stimpsons got a crash course in life behind the billboard of medical miracle, and learned how care of preemies can greatly differ, and, perhaps most important, how patients' families must learn to be consumers when trying to find that care. What keeps a family going when a child spends a year in the hospital? In compelling prose, Stimpson traces the life of his child from birth to kindergarten: four wings in two hospitals; coming home with a roomful of medical gear and round-the-clock drugs and nursing; the gains and downturns of home therapy through Early Intervention; finding and prospering in a special-needs preschool; a diagnosis of autism; and the ongoing battle to give Alex a fair shot at childhood, and at life.

Freigegeben:
Aug 30, 2005
ISBN:
9781613734667
Format:
Buch

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Alex - Jeff Stimpson

Published in 2004 by

Academy Chicago Publishers

363 West Erie Street

Chicago, Illinois 60610

© 2004 Jeff Stimpson

All rights reserved.

No part of this book may be reproduced in any form without the express written permission of the publisher.

Portions of this work have appeared in Ithaca Child, The Village Family Magazine, Abilities Magazine (Toronto), and Laughing and Learning: Adventures in Parenting, among others, as well as on the following Web sites: Cold Glass, Early Edition, Fatherville, Mensight, Premature Baby Premature Child, Sevenseasmagazine.com, Storknet, and Whim’s Place, among others.

Printed in the U.S.A.

Library of Congress Cataloging-in-Publication Data to come

For Jill

CONTENTS

JUNE TO OCTOBER, 1998

NOVEMBER AND DECEMBER, 1998

DECEMBER, 1998, AND JANUARY, 1999

FEBRUARY TO MAY, 1999

MAY AND JUNE, 1999

JULY TO NOVEMBER, 1999

NOVEMBER, 1999, THROUGH MARCH, 2000

MARCH TO MAY, 2000

MAY TO JULY, 2000

JULY TO NOVEMBER, 2000

DECEMBER, 2000, TO JUNE, 2001

JUNE TO SEPTEMBER, 2001

SEPTEMBER, 2001

SEPTEMBER, 2001, TO JUNE 2002

JULY, 2002, TO JULY 2003

JULY TO SEPTEMBER, 2003

EPILOGUE: MAY, 2004

RECOMMENDED RESOURCES

PHOTOS

JUNE TO OCTOBER, 1998

SOMEBODY YELLS BOY! Everything I used to want turns to mist when someone sails past with a baseball. Later I learn it’s his head. I think it’s gray. I peek on tiptoes as a clot of doctors dive onto the Boy!, and beyond their gowns I glimpse hands and feet the size of a GI Joe’s. So small, I whisper. So small it kicks my chest. They slide him into a clear plastic box, and wheel him away.

Our road to parenthood had already been twisty. My wife Jill and I were living in Baltimore in early 1997, trying to conceive a baby. When that didn’t work, we headed to doctors, who gave us appointments, exams, and odd things to do in cups until one evening in December we heard the nurse on the phone say, Jill, your test is … positive! So we quit our jobs at suburban Maryland newspapers and wheeled it back to the New York City, where Jill is from. In the months since, we’d been pinballing from sonogram to sonogram to let doctors probe Jill as if hunting for a submarine. They said the baby was small, small, small.

They can tell a fair amount about a fetus just by looking at the sonogram: what it sort of looks like; how big it is; if it’s moving the right way; if it’s making the pre-breathing movements. Alex seemed okay for most of those things, but he was way behind in growth, which we discovered when Jill went in for a routine sonogram at around twenty weeks and was told that Alex was roughly a seventeen-week size.

Around this time, one of the doctors had begun to sigh a lot, and started to use the word miracle in a bad way, and not long after that four new letters landed in our lives: IUGR, or intrauterine growth retardation. Alex didn’t just arrive prematurely: They chose to deliver him early, thinking that he would do better outside the womb than inside. Jill had also been given steroid shots to develop his lungs for this early delivery—though, in the time since, research has shown that steroids don’t help in these cases.

The doctors were dating growth from before conception, which made no sense to me. But as our submarine dropped further down a percentile chart of fetal growth, the doctors began wondering when intensive care might be best. Let’s just hope you make it to twenty-eight weeks, the doctor sighed. Then twenty-nine weeks. Then thirty … As the numbers climbed, the doctor’s hands waved and waved in wider and wider circles, and she felt compelled to add that she’d be praying for us. They continued to monitor the fetus with, eventually, daily and detailed sonograms, measuring it and looking for specific signs of movement and particular behaviors, such as joints flexing, and pre-breathing movements—entering Alex in the first critical race of his life: develop, or come out.

Jill went on bed rest, sentenced to rented movies and my cooking. She rose only for sonogram appointments, which jumped from once a week to twice a week to once a day, which pretty much killed time until she was ordered into the hospital after a technician seemed at sea one day during a biophysical (the detailed sonogram), and the doctor didn’t see the signs from the fetus she wanted to see immediately. In the years ahead, Jill would say that if she had it to do over again, she’d insist that the doctor wait half an hour, let her eat something, and try it all again. But a pregnant woman is rarely in a position to fight off panic and battle a doctor.

So we came to that Sunday, when Jill gave me the news and I said, Okay. I just hope the kid isn’t too shocked, she added, looking out the window, her hand on her belly where the kicks continued.

Premature labor affects a fifth of pregnancies in the U.S., and annually some 400,000 premature infants—preemies—are born in the country before the thirty-seventh week of pregnancy. The trickiness of predicting the outcomes for such fetuses has been documented. My family was looking at two and a half months early.

Tick tick tick went the heart monitor in the OR as I tied on my papery surgical mask and wondered how life was about to change. Wondered how I was going to screw up this kid. Wondered if I’d get the chance to screw him up. There was nothing to do but stroke Jill’s head, listen to the surgeons’ chatter and remember the comforting words of The Neonatal Intensive Care Unit Parent Information Booklet, a hospital handout that begins with the observation, We know this can be a very stressful time.

The Neonatal Intensive Care Unit, or NICU (nick-YOU) looks like a baby hatchery: it has a clean, gluey smell and is crammed with carts and medical gear and clear plastic boxes called isolettes. Inside the isolettes, most of the arms and legs don’t move; their owners seem pretty tired. Cries are muffled—one infant sounds like a crow—but red and green numbers on monitors constantly set off alarms, bleeps and bells that shatter any sense of a homey nursery. Jill has told me preemies can hear, and some parents fill a few cassettes with recordings of the NICU to play for their baby when it comes home.

In a premature infant, the lungs, digestive and circulatory systems are undeveloped. Preemies’ most common health problems affect breathing, heart, brain, body heat and eyes—the latter problem may result in permanent blindness (Steve Wonder was a preemie). Premature babies are at increased risk for apnea, in which breathing temporarily stops for twenty seconds or more. Maybe a lot more.

Someone has stuck a piece of white tape across the front of my son’s isolette and written Hi! I’m Alexander! No other baby has a piece of tape. Tubes run into Alex’s isolette. Blue tubes, green tubes, clear tubes, fat tubes, fine tubes. One carries in warm, humid air; another runs into his pinhole left nostril, and a wider clear tube goes down his throat. He opens his mouth wide, but no sound comes out because the clear tube is between his vocal cords. My kid is painstakingly crafted with miniature versions of my feet and with knuckles the size of these letters. My finger is monstrous in his hand. His eyes are closed, wrinkles rippling across his forehead just as they did on the forehead of my father, who also had thin hair. Alex has my nose. I open the porthole of the isolette and peer in. I look at his palm; his lifeline is long.

He is one tough little kid, his doctor tells me, then reiterates all that may yet go wrong. As recently as the 1980s, doctors were brutal with the parents of preemies, standing over isolettes and spewing predictions of everything from a quick death in infancy to a bad social life in grade school. Don’t touch them, they’d say, don’t bug them; their nervous systems aren’t formed, and the case is kind of hopeless anyway. These days the medical profession has wised up a little—some nurses encourage holding, for instance—but nobody will predict anything more than a day, sometimes an hour, ahead.

Some babies fall apart within six weeks, the doctor says. Some take right off. Your experience will probably be somewhere in between.

I’ve never been a parent, but I already make a prediction of my own: a years’ worth of worry, helplessness, highs, lows, daydreams and dread will be crammed into the next eight weeks until—at the soonest—Alex can come home.

I’m optimistic, the doctor says.

Optimism floats us through the first week. Jill and I get plastic hospital ID bracelets, hers with Mother and mine with Father and both with the number 64092. My life becomes a pattern of days spent at work, then meeting Jill at the hospital over Alex’s isolette. We cradle his head and touch his palms, watch him squint and learn to yawn. I write a letter to Alex, pregnant with feeling and significance. You are part of that river of humanity that has had billions and billions of bright sparkles upon its surface. You’re one of those sparkles now, I write to him.

Meanwhile Jill hooks herself to a pump to begin trying to lactate. But the stuff comes hard, and soon she hates opening the door of the pumping room fridge and seeing the full beakers of the other mothers; soon she speaks about full-term moms and their bully babies in the same tones she once used to describe other drivers on the Beltway.

Each night at nine o’clock that first week I leave Jill, who’s still recovering in the hospital, and head home, arriving at about ten o’clock, and spend two hours juggling phone calls. Amazing how a 21-ounce person has started phones ringing from Tucson, Arizona, to Waterville, Maine. Awful big name for such a little baby, my sister says. Little guy, isn’t he? my brother says. The phone rings and rings until I get about four or five hours’ sleep a night, and begin to feel like a parent.

Alex doesn’t call, because he’s busy. When the big ventilator gets to be too much, they attach a device that makes his chest flutter. They wiggle a tiny stocking cap on his head to preserve body heat. The dial controlling the percentage of pure oxygen in his air tube goes up to 70, down to 25, and gradually settles around 30 to get him used to breathing air (which is about 21 percent oxygen). I look at Alex and I know that he doesn’t know what he’s doing here. He doesn’t know what a transfusion is when he needs one on Tuesday night. He doesn’t know what jaundice is when it sets in, when they haul out banks of purple lights and bake him while he lounges like a preemie movie star in a pair of tiny black eye shades. His right fist finds his mouth. We learn he may qualify for Social Security. Around that time, a grandma new to the NICU walks past Alex’s isolette and looks at him as she would a car wreck. We tell Alex he’s just met his first jerk.

This is how the first days go, before Alex turns one week old on Father’s Day. To celebrate, Jill’s mom sticks her head near the isolette port and breaks into 99 Bottles of Beer in the Wall. Jill and I squabble about who gets to change his diaper, which is about the size of a pack of playing cards; it’s the smallest size they make, and it’s too large on him. This is how the first days go, while our world goes up and down, mostly up: good heart, cloudy lungs; firm kick, yellow color. He pinks up, twitches in a way that lets me glimpse the baby that my child will become.

This is a very stressful time. Day to day I try not to stare at the babies and little boys on the street—hordes of them, a mob, a terrifying many because all, all are bigger than Alex. Time after time my stomach will not stop catching when I enter that bright room (Hi! I’m Alexander!) and go once more into the bleeps, praying that no bell tolls for him. Praying, as I look down at my boy through the clear plastic and realize that I am the one who feels so small.

Alex turns a month old without ever leaving the hospital. I learn to call him a preemie, a cute new word in my life that has let in menacing associates: BPD, desat, brady (bradycardia, when the heart rate falls below 100), and others that on every visit cause Jill and me to keep one eye on Alex and one on his loud, pitiless monitors.

An Irish nurse calls him the wee man. But he’s seven ounces bigger than when he was born, and so far this week he’s gained about twenty grams a night. I think a penny weighs about twenty grams. Sometimes we take him out of the box and hold him for a half hour, hoping that ounces will never be this important to him again. Or to us.

Doctors tell us that parenting a preemie is a roller coaster. Jill says it’s more like pinball played badly. Both similes hold up during a typical weekend with a preemie: Friday afternoon the head doctor greenlights our holding Alex skin-to-skin, and gives his overall assessment of Alex as pretty good. But when’s the kid going to grow?

Not this Friday, which is a bad day. The doctors give Alex a spinal tap, then have to move his isolette once or twice. That evening the bells go off, as Alex starts desatting, meaning the oxygen-saturation in his blood dips below 80 percent (not good—it should be very close to 100—but this happens to a lot of preemies). The numbers refuse to rise; the doctors wheel in an X-ray machine that must look to Alex about the size of a mobile home. Don’t touch him just yet, they tell us, and come back in a few minutes. So we stand back like tourists watching a mugging while they turn the lights up and dive on him. Couldn’t some of the reading be caused by his squirming? It’s amazing what a baby’s wires can get into. No, they tell us, no. The doctors never look at his face. Another doctor says Alex needs a diuretic to get fluid from his lungs. Later we’re told we can hold him, but after the nurse finishes feeding another baby. Then a hideously young doctor flies by and bombs us with the word pneumonia. Jill cries all the way home.

Everybody wants to know how he is. Why’s he desatting? Why don’t they feed him more? What kind of infection? Why don’t you find out? Jill and I turn off the phone and open beers. We sit at the table and drink beer and talk about a time when others might actually understand something about our lives and when we’ll understand how we can follow the nurses’ advice and take care of ourselves. The hardest thing about this is telling other people, Jill says. I wish there was a way to have a conversation with someone and have them just not ask.

On Saturday, Alex is fine. Jill holds him to her chest, and he stares up at her chin with eyes bluish and bright under a tiny wrinkled forehead, and goes to sleep. It’s amazing what’s possible again. As the poppa, I will announce that Alex has sucked his thumb twice that we know of, and is the only baby in the NICU who doesn’t need a constant IV. Jill is filling more and more plastic containers with breast milk, while I watch and sometimes handle the timer. The doctors inject his milk with stuff that has initials.

Jill and I spend a week at her parents’, which is close to the hospital, to save the time we spend on the subway hating the word desat. We take the bus up each evening, and afterwards walk back south the eleven blocks, along the darkened park. We pass the same doormen and the same brooding museums. Ahead of us on the walk, never seeming to get any closer, is the brightly lit 1 of the Empire State Building. We sit on a low wall and weep or work out a strategy for the next time we walk in and alarms are going off.

Alex begins to grow. His eyes move around. A doctor tells us that yes he can see, but his brain can’t process the information. The nurse takes him out of the box and I hold him, wishing that the people with the questions could feel his weight and could look down and see his head like a fuzzy ball on their chest. In his box we put a stuffed football rattle, a postage-stamp drawing of a sailing ship, a Tiny Toons Bugs, and a little teddy bear. On one wall of the isolette I tape a headline from the NY Post that reads, Tough as Nails!

Then it is another Sunday. This will just take a few minutes, says the doctor as they turn up the lights and more and more doctors gather over him. He’s moved a tube, so they say, and it has to be re-inserted. Jill and I flee into the empty breast-pumping room, then settle at the empty doctors’ station and eat their jelly beans. Jill picks up a neo-natal textbook—bad move—and reads that by six weeks many premature babies double their birth weight. Alex hasn’t even gained a third of his. The few minutes drag to an hour. More doctors come in. We buttonhole two of them on their way out and learn they are anesthesiologists called in to supervise the insertion of a new tube. Alex lies squirming for almost ninety minutes while a plastic tube is shoved down his throat twice. Jill is ready to shatter when she asks if they can give him a sedative. We don’t do that to babies this size, the doctor says. There is always an answer. This time the answer is that Alex vomits during the tubing, and may have to go on days of antibiotics if he got any of the stuff in his lungs. We’ll know later tonight, a nurse says. The Tiny Toon Bugs has been flattened against the bottom of the box.

Jill cries halfway home. We sit on a bench near the park and she pulls back from the edge of a rant. I have no ranting in me. I just wish my new family felt better. I have a better handle than Jill on getting through this one step at a time, but part of me wishes I could rant. And to the right people. Once Jill and I had things to do this summer. But no plan feels as real as the hospital. When I see my son inside the box I know he doesn’t give a dirty diaper for our plans. He’s here, he’s tough as nails, and somebody’s going to pay attention for however long this takes.

People are still asking about Alex by the time he’s seven weeks old, and two pounds. He moves around and likes to take a bath in a plastic bowl. Recently he had his first tantrum, during which he resembled his mother. We’re near tantrums of our own. Sometimes I understand other parents when I look through the plastic of the isolette and into his eyes, which are the color of the night sky when you’re having a good evening. That face through the plastic makes everything else evaporate. At other times I hate clear plastic and I hate other parents and their fat children who grow. So does Jill.

I’m not proud of that, she says. So? In two months Jill and I have had two days we’d call normal. The first was when a friend came in from Philadelphia and we spent Saturday in the park, and later had a real dinner in a real restaurant, with mussels and wine. Once I went to a model boat show. Jill has rediscovered thrift shops, and found a pair of shoes for $9. Another friend flew in from California and we went for a walk by the harbor. It was a sunny day, and there were many children. Then I went back to the hospital. Alex’s room is a long, long way from sunny days near any harbor.

But mostly, I head to work in the mornings. Once or twice through the day Jill calls, telling me about her morning’s projects and how she’s late getting out the door. Then she travels by bus or subway or car an hour to the hospital, and from there in the afternoon she usually calls me to say that Alex is fine. I stay awake through the afternoon on more junk food than I ever ate in high school, and at five o’clock I take two trains and one bus to the hospital. There I flash my wristband to the guard and enter the second half of my day.

I take a deathly slow elevator up three flights. I walk down a corridor and into a room painted sky blue and peach, where the door of the one bathroom for thirty parents has needed oil on the hinges since Flag Day. In a room bright with bells and monitors, I find Alex in his box. I spend an hour speaking to Alex softly through the porthole, telling him how I know he can do it, and humming Little Papoose or something else intended as soothing.

I only know a few words to Little Papoose:

Lit-tle pap-oose

Lit-tle pap-oose

Rock-a-bye, rock-a-bye, little papoose

Lit-tle pap-oose …

There are more words, which Jill knows, but after humming it to Alex for an hour even she describes the song with language that she, a new mother, should stop using soon. We leave the hospital and sit on a bench across the street. There, Jill says, she’s come to know the dogs that are walked by, what kind of ice cream the vendor has, the block’s lone speckled pigeon. Then Jill and I find a bus for home in Queens. Jill does the crossword on the way. I’ve never liked crosswords, but lately I lean over them with her. I hope one of the clues is never, Last word of the full version of ‘Little Papoose’.

We come home to a blinking answering machine. Just wanted to see how you’re doing. Call sometime. Hope you’re well. Just wanted an update from you guys. There really is just one message: Just wanted some answers. I leave an Alex update on the recording, hoping some callers will just listen to it and hang up. We spend an hour watching Larry Sanders on tape and trying to log on to AOL. In cyberspace we find that our answering machine did not field all the world’s questions. So we broadcast an update on his spirits; his movements and twitchings; his eye color and finger length; his weight in grams, the all-important grams, a goddamned unit of measurement that I guess I never thought about before.

Some days are harder than others. Days when we get to change his diapers are good days, because his middle soon grows too plump for preemie Pampers. As a rule, though, Mondays are the worst. Another week in the hospital, another week of messages and e-mails and asking for a nurse’s recommendation before we pick up our kid. Jill and I sit in the living room by the window. She cries often; I touch her leg. We call the hospital to see how he’s doing. Hi, I say, this is Jeff Stimpson. I’m calling about my son Alex Cornfield. I believe- insert nurse’s name here -is his nurse … Monday turns to Tuesday some time while we sleep. And we never sleep enough.

One day Alex pulls out his breathing tube; a nurse later tells us that when this happened, he looked around as if seeing the world for the first time. He pants on his own for six hours, then his brand-new chest muscles give out and the tube goes back in. Two days later he pulls it out again. Back it goes. One night my holding him just doesn’t work; he fusses, he cries, the bells won’t stop. I put him back in his box. Jill suggests maybe we can just visit him. I—don’t—want—to—be—here! I hiss at her. The intensity feels good, but she recoils as if smacked and over her shoulder I see the nurse’s head turn.

Some days are better than others. We plan the menu for his kilo party—foot-long hot dogs, liters of Coke. Jill’s sister suggests graham crackers. But night after night his weight bumps slowly toward 1,000 grams. I try not to notice how many days go by with Alex gaining only the weight of a nickel. I’m sorry it’s all I can talk about, Jill has said in our living room, on street corners, on buses and in cabs. And to doctors. After a while, we wonder how much they’re listening to us and our instincts about Alex, and how much they’re listening to a pre-learned method of treatment. After a while, I get the feeling I’m talking to people who are treating their last patient, people so tired they feel free to say anything that comes into their heads.

Talking to the doctor one afternoon becomes one of those moments when Jill and I turn from sadness to anger. About mother’s milk, for example: the doctor claims nature isn’t perfect. Look at that tsunami in New Guinea.

Jill straightens in her chair, pulls in her chin and smiles with a calm tolerance that I haven’t seen in a while. Doctor, that is a specious analogy, she says. I see him silently mouth the word.

And I used it right! Jill says later in our study, over the open dictionary. That study will be Alex’s room. Some day, if we can ever pick up these papers. The dining room table is also disappearing under bills, unopened mail, keys, bags, and everything else.

It was a perfect word, I tell Jill.

Really? she says. Really?

We won’t pick up papers tonight. Instead, before we go to bed, we sit again at the window, everything in our lives feeling heavy, trying to uncoil over a crossword puzzle, trying to remember that we got through another day without needing a little plastic box of our own.

Pretty soon Alex doesn’t look like me anymore. He’s a little Jeff, Jill used to marvel. That was nice. Who’s Daddy’s little guy? I ask him. "Who’s Daddy’s little guy? Alex is!" We both know the answer, I guess, but several times his hand has found my nose. His hand is now bigger than some postage stamps.

Alex gained no weight for an endless while. In that time he seemed to take no notice of Mom and Dad’s exhausted faces pressed against the plastic. He started out skinny, too, his arms and legs pinkish-gray straws. For a long time Alex had a thin plastic tube down his throat, and often an IV with a tongue-depressor-like white plastic board jabbed in his forearm or ankle.

Now he peeps when

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